Life with autism, breast cancer and other adventures

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Monthly Archives: November 2016

I hate being bald. So gross! Ok, technically I have about ¼ inch of fuzzy stuff – mostly just above the ears – with a fascinating pattern of complete baldness where my bangs should be and a few stray funky sprouts on the top of my head. Many days, I feel like my teenage boys and I have more in common than ever with their journey through puberty and my journey back from losing all body hair during chemo. My chemically induced hormonal craziness just makes us all the chummier! It’s a regular party around here some days – I’ll let your imagination fill in the blanks.

Having no hair just plain sucks. The weather has grown cold over the past week, and I never realized how helpful hair is for regulating body temperature. Wearing a wig is uncomfortable, and makes me horribly hot. There is no middle ground – wig = furnace/ugly sweating & baldness = freezing cold. I know – I’m just a regular picnic of positivity – don’t you think?

Here’s the deal – the physical aspects of hair loss are flat out minimal compared to the emotional for me. For someone who has always felt sort of average in every way – I’m not thrilled with the attention/looks/stares/horrified glances I receive wherever I go. Am I exaggerating due to extreme discomfort? I’m sure I am because even while I may notice the nuanced quick double take (because I’m looking for it) most people are just busy doing their own thing and move on with their own crazy/busy lives without giving it a second thought. Besides, it’s not people that bother me, its cancer. It’s not as if anyone even knows or recognizes that they do it – it’s just a natural reaction. The same reaction I’ve undoubtedly had for all these years leading up to my diagnosis even without knowing or consciously thinking about it.

Sometimes, I can sense people trying to get away from me as quickly as they can. Again – not really me, but the visible “I’VE GOT BREAST CANCER” kind of beacon that radiates like a blinking giant Grain Belt sign subconsciously all around me. I don’t blame them at all even when it’s quite noticeable. Instead, it makes me think about their own secret book chapter that no one knows about. Maybe their Mom/Grandma died of breast cancer? Maybe their best friend from high school just got a recurrence and is struggling with all that it entails? Maybe they don’t really know anyone at all with any kind of cancer, but it’s just weird and scary and they want to avoid it? I know I’d like to! Wish I could join them as they tactfully navigate as far from me (cancer) as they can get.

It’s just that for right now, my private book chapter is wide open for everyone to see – even if I’d rather just shop for milk and the occasional container of Poppy Cock in peace (yes, I did include Poppy Cock on purpose with the intention of being inappropriate – I own that).

Alas, I actually get similar looks when I’m wearing my wig, which is infrequent. All summer, I barely wore it at all because it was horrifyingly hot. But I have a loose rule for myself about semi-consistency – so for instance, I always wear a wig to school meetings, so I will continue to do so. I never wear a wig around the house (usually one of a giant pack of colored bandannas just for comfort), so I won’t start doing so here and there “just for fun”. Sadly, the one place it’s hit and miss is my local grocery store. It’s walking distance from my house, and it has a Starbucks. I rather love coffee, and to be fair, heavy caffeine use has gotten me through more than a few challenging days. I get the funniest looks from the staff there – mostly that “you kind of look familiar, but I can’t place you” look, and I feel sort of like I’m duping them, but it’s unavoidable. Sometimes I need coffee before a meeting at school, and I have my wig on, and sometimes Ada & I walk there as we’re discussing whatever drama is occurring in 4th grade that day.

I know there are many who have done this cancer/baldness thing very differently than me. There is no right or wrong way to do it – and while it may poke at my insecurities more than I’d like, I recognize that not everyone feels that way. I know some who never wore a wig nor covered their head and felt perfectly fine with it. I also know of those who were never without a wig when in public and even had family members or friends never realize what was going on because that was important to them. For what it’s worth – prior to my hair loss I didn’t believe I’d care as much as I do – I mean it’s not like I had awesome hair and my youth has frankly already exited stage left. It was just part of me, and for whatever reason, I miss regular old me more than I knew I would.

The last few months have been unbelievably challenging for me – mentally, emotionally, and physically. I’m tired, my muscles ache, I have breast expanders in that look like breasts but feel like heavy rocks and my children now ask for side hugs so I don’t hurt them. These beasts won’t be swapped out for silicone until June because my skin will need to heal from radiation, so for now it’s me and my foobs. Yes, it’s horribly gross, but I believe I could use them as a self-defense weapon if needed, so keep that in mind!

I’m sad, I’m tired of being tired, I’m forgetful, I’m missing out on too many parts of my life that I value and I’m worried that my treatment is negatively impacting my children and our family. There are many days I recognize the life lessons my children are gaining experience with during this journey that will benefit them in the long haul – today is just not one of them. I’m frankly cranky with cancer today.

Some nights, I lie awake and worry about whether or not it will return. Before I was diagnosed with breast cancer, I had no idea that 30% of Stage 1, 2 and 3 breast cancer patients will at some point progress to stage 4, otherwise known as metastatic breast cancer – the only breast cancer that kills you. Sometimes I scroll around on a breast cancer online support group that lists details about your diagnosis and other particulars about your specific cancer (hormone receptor status, HER2 status, etc), and struggle with the sheer randomness of who progresses and why – there is no discernible pattern and it’s alarming that it can return in 6 months, or 16 years or never. Even though I’m still firmly in the thick of things, I wonder if the day will ever come when I feel a sense of peace and just make the best of each day with an acceptance of the uncertainty? Even better would be for science to focus on ways to help those living with stage 4 breast cancer so that it becomes more of a chronic disease or best of all – develop a cure.

Autism, of course, doesn’t care that I’ve been in breast cancer treatment mode since March. We have the most amazing village around, but even so we continue to face new and different challenges with each of the kiddos. This week, we’re working through some school wrinkles with E, and I left a school meeting yesterday with blotchy red eyes from crying for an hour, embarrassment for not having an ounce of emotional stability for what is quite frankly not nearly as serious as some things we’ve faced, and to top it off – a crooked wig. (Yep – now we’re back to hair.)

Elliott made some poor choices today on my Facebook wall and sent a few unexpected emails to teachers and administrators. He needed to be reminded to use his manners, turn his day around or face the loss of privileges. Sometimes he can think things through and get positive and sometimes not – I was not optimistic given my mood and the day I’ve had.

He walked in the door, said hello, and immediately apologized for his actions. Then he said “I may have had some challenges at school today and I want to tell you about them” – he did so (all were soon confirmed by a teacher email). He was calm and told me some things that have been weighing on his mind of late – some that I didn’t know – some that are likely contributing to his challenges. He expressed himself so well, and owned some things that I didn’t know he fully grasped, and it was a mom moment I’ll be forever proud of.

Then he started to walk downstairs, but turned around and said “I wrote on your Facebook because I like to see your picture with the wig on” – I asked him if my hairless head was bothering him, and he looked right at me and said “no – I don’t care that you’re bald, I just think you have a really nice wig”.

Kind of made my day. Now he’s vacuuming my counters (don’t ask) and baking a pumpkin pie. As a bonus, Henry is (mostly) caught up on his missing assignments and Ada has made vast improvement on her musical recorder skills. Day by day – one foot in front of the other.

May you find a bit of peace and joy in the everyday simple things life gifts you – no matter what your hair looks like . . .